Use HIV Surveillance Data to Identify NIC Individuals
The first step is to extract from the health department’s HIV surveillance database a list of individuals who are probably not in HIV medical care currently. eHARS software manages the health departments’ HIV surveillance databases, which can interface with data management/analysis software such as SAS to extract the list. The most basic data requirements for data extraction are:
- Currently residing in jurisdiction
- HIV diagnosis at or before the end of the specified time period,
- Vital status “Alive,” and
- No CD4 (count or %), viral load, or genotype test result during a specified time period.
The Division of HIV/AIDS Prevention’s HIV Incidence and Case Surveillance Branch (HICSB) provides a SAS program, called
eHARS SAS Program for Identifying Individuals Not in Care, with flexibility to modify the “specified time period,” to accomplish this step. The program is available on
HICSB's SharePoint Web site. HICSB’s SharePoint Web site is an access-controlled site only available to HIV surveillance personnel. HIV surveillance staff members who do not currently have access to the SharePoint Web site should consult their assigned HICSB epidemiologist or project officer.
Health departments also might choose to run a locally developed analytic program that performs the same function. Because standards of care, resources, data quality, and the number of “not in care” (NIC) individuals vary significantly across jurisdictions, health departments should establish their own NIC definitions and criteria. This might include decisions about whether to prioritize individuals with no evidence of previous care or individuals who did not continue to receive care, and which criteria to use for determining whether someone is in or out of care (e.g., 3, 6, or 12 months with no CD4 or viral load measure).
In addition to using eHARS to manage HIV surveillance data, many surveillance programs maintain supplemental databases (i.e., laboratory databases) to assist with processing and managing incoming surveillance data. CDC requires that all surveillance programs enter all laboratory data into their eHARS HIV surveillance database as a condition of their funding. Surveillance programs might consider using their supplemental databases to help create their NIC list if there is a backlog for entering such data into eHARS.
It is important to recognize some limitations when using HIV surveillance algorithms for identifying HIV-diagnosed NIC persons, which might lead to persons being flagged erroneously as NIC when they actually are in care. Examples of why and how this might occur include:
- Delayed laboratory reporting or data entry;
- Incomplete laboratory reporting that can result when a state does not have mandatory reporting of all CD4 and viral load values and an HIV-diagnosed person’s results do not meet the reporting threshold;
- Poor-quality laboratory data, such as results missing a patient’s date of birth or sex, that preclude matching and entry of the results in the surveillance database; and
- Transience of HIV-diagnosed persons where the lack of laboratory results for an individual could be indicative of them moving to another jurisdiction or getting care in another jurisdiction.
These limitations underscore the importance of HIV surveillance programs working diligently with laboratories, healthcare providers, and internal staff to improve the quality and the timely reporting/entry of all laboratory and case report data. Experience from jurisdictions currently using surveillance data to support linkage and re-engagement in care reinforces the importance of timely and quality laboratory data to achieve best use for Data to Care purposes.